UK publicly funded Clinical Trials Units supported a controlled access approach to share individual participant data but highlighted concerns.

ABSTRACT:

Objectives

Evaluate current data sharing activities of UK publicly funded Clinical Trial Units (CTUs) and identify good practices and barriers.

Study design and setting

Web-based survey of Directors of 45 UK Clinical Research Collaboration (UKCRC)-registered CTUs.

Results

Twenty-three (51%) CTUs responded: Five (22%) of these had an established data sharing policy and eight (35%) specifically requested consent to use patient data beyond the scope of the original trial. Fifteen (65%) CTUs had received requests for data, and seven (30%) had made external requests for data in the previous 12 months. CTUs supported the need for increased data sharing activities although concerns were raised about patient identification, misuse of data, and financial burden. Custodianship

SUBMITTER: Hopkins C 

PROVIDER: S-EPMC4742521 | biostudies-literature | 2016 Feb

REPOSITORIES: biostudies-literature